Just DX, husband very upset...

Discussion in 'Fibromyalgia Main Forum' started by Caralissa, Jul 30, 2003.

  1. Caralissa

    Caralissa New Member

    I was just told today by my doc that I have FM. This was not a surprise to me, I have been dealing with on and off major disabilities since I was twelve. I am 24 with a seven yearelling old step son and have been married almost two years. Since I met my husband I have barely been able to work, I also have damaged discs in my lower back. He has been very supportive and proactive with the doctors. This last year has been very difficult, lost jobs, disibilty running out, rising medical costs and one complication after another with my health. He has to watch me many days when I can't get out of bed or walk. He has watched me deal with major depression. And the final blow was today when I told him what the doctor said. He doesn't understand the way FM is diagnosed. He thinks there should be a blood test. Then he tells me everyone he has ever known who had it was popping pain pills the rest of their lives and in wheelchairs. I tried to tell him it's not as bad as it could have been, at least I'm not going to die. He responded by telling me that the people he's seen with FM would have been better off dead than living with FM. He works 90 plus hours a week due to our finances and I feel like I'm just a burden to him. I feel like I after support him through this when I am the one actually living with it. How do I make him understand what FM is and that it doesn't mean my life is over. I understand I have limitations, but it seems he thinks life is over once you're diagnosed with something like this.
    I'm sorry this is so long, I have no one to talk to about this who would understand.
    Thanks, Christina
  2. babyjoan

    babyjoan New Member

    Boy does this sound familiar. So often we the VICTIM have to feel the frustration of our loved ones. We know we can be a burden but I don't know what kind of advice to give you other then to give your husband as much literature you can find on fm. I hope that helps. I don't know if there is a support group for family's who's loved ones have this DD? Maybe some of the veterens of this board can offer more help or suggestions, I'm still a newbie. You are in my prayers.

  3. elaine_p

    elaine_p New Member

    You say disability is running out. Have you applied for SSDI, or for SSI if you don't qualify for the other? That should ease some of the financial burden. Sorry I don't have any suggestions for the rest.
  4. fibrorebel

    fibrorebel New Member

    So glad you have found us so quickly! There is more information, support, and numerous ways to research here than I was able to do on my own for 7years. I am sorry about your Dx, but so glad that you reached out and found this board. At top of the page you can find a spot on the right side to click on for new members.
    Also, I am sorry that your hubby took the news so bad, he is most likely just feeling helpless to be able to help, many of us have had the same difficulty w/ our families, as you gain more info try to share it with him. Things will get better. I would strongly suggest that you borrow from lib, or purchase a book by Dr. Devin Starlanyl called "Fibromyalgia and Mayofascial Pain Syndrome : A Survival Manual. No kidding, it IS a survival manual.
    Has everything from explaining the illness to coping with it, to things that really do work on decreasing or ridding symptoms, PLUS what todo about family, how to explain your illness to family,friends, co-workers etc. It is the most incredible and pro-active thing I did. You are a very young woman and there is no reason to believe your life is over. Visit here often and just see how different you feel, knowledge is power, the more info we get the more we feel in charge.... again, welcome! love, Rebel
  5. iconracr

    iconracr New Member

    You know what I told my DH, you now know what it is. AND, you can get some help and hopefully relief.

    I am sorry that he put all of this on you. You know, you have to remember, this is not only happening to you. It is happening to him too. TRY not to take it so personally.

    I have gotten my husband totally involved in the medical process. He now understands what I need. That is not saying he is supportive 100% of the time. He works 60+ hour weeks, helps with our two children (1 and 5), many days dinner is not ready when he gets home and he spends the weekend cleaning our house. I can't really complain when he is less than supportive. IT is not fair to him

    But then again, it is not fair to either of us.

    I hope things get better.
  6. Mikie

    Mikie Moderator

    Welcome to our board. First, your husband is overreacting, understandably if he has seen people with FMS in that bad of shape. What he needs to understand is that there is a lot which can be done. You didn't mention what your doc offered for treatment. BTW, in a sense, your husband is right. A lot of blood tests are done, not to diagnose FMS but to exclude a lot of other illnesses which mimic ours. If your doc didn't do this, find a doc who specializes in our illnesses. If you post with your location in the title of the post and ask for doc referrals, some of our members may have some suggestions for you.

    Two years ago, I was bedridden most of the time and taking Morphine for the pain. It has taken time, but I am now looking toward trying to return to work. I seldom have to take anything for pain. I do take some meds and some supplements. What works for me may not work for you. It's a slow trial-and-error process. Be sure your doc is treating your worse symptom first, whether it is fatigue or pain. If you have to, find a pain specialist. Become very proactive with your docs.

    Stick around and learn all you can about your illness. Let your husband read this if you think it will help him. It is critical to healing to stay optimistic and not let the illness take any more from your family than it already has. Good luck to you and don't give up hope.

    Love, Mikie
  7. kar1953

    kar1953 New Member

    Welcome to the board. I can't totally relate to your situation since I have no children to worry about, but the rest I can.

    At the top of the page when you click on view posts, the 1st. post is CFS & FMS Patients Guide (or something like that). You can order these phamplets for free - this is a good way for your family to understand what you are going through. I ordered some & gave to family & friends. Some had other questions & I was glad to answer if I could. This phamplet explained things sufficiently for friends, family wanted a little more detail.

    Also the book that Rebel told you about is great. I just got it from my local library - haven't read it all yet, but what I've read so far is invaluable.

    Hope this helps you just a little.

    BTW, after reading Mikie's post I'll tell you what I do. If I read something on this board that I think will help my husband deal with all this I print it out & give it to him. He has found this very usful. He doesn't have time to sit at the puter & read all these wonderful posts. So this works for us.

    Take care.....Kathi
    [This Message was Edited on 07/31/2003]
  8. RedB

    RedB New Member

    that I definitely am not "better off dead".

    I am NOT in a wheelchair, nor have I ever been in one.

    I live each day to the fullest, although many are in great pain.

    For awhile after your diagnosis, things will be extremely rough, because you will need to share your pain with him. After awhile, you will learn many things about yourself and your pain, and things will ease up for both of you. You will find that, for his sake, you will only share your worst days that are the hardest for you. But ask him to please be there for you now, when things are scary, and in the future, when you still need a "chin up".

    I have a 20 month old grandson who I take care of 3 to 4 days a week, and I am 53 years old. Tough, yes. Impossible? No. "Better off dead"? I don't believe he will ever think that about me.

    Walking keeps me mobile, so that I am still able to do everything that I have always done. Some things, I only do for minutes at a time, others for longer. Many things, I do not do as often as I used to, but I still try to live my life as normally as possible, and no one around me has ever thought I would be "better off dead".

    Please tell him also that even if you should have to live your life in a wheelchair, you can have a very productive life.

    And, "pill popping" is sometimes a necessary evil if you have an illness. Very few people live their lives without something being wrong with them at some time or another. Right now he is too young to understand illness, but he will learn. The older I get, the more sympathy I have for the health of others around me, and this has nothing to do with being sick myself. It is just nature. Some of us, unfortunately, just become sick sooner than others. My 70 year old parents are just now beginning to suffer from old-age problems, and I never thought I would beat them by 6 years, but I did! But at least now, I am prepared for what is happening to them.

    Please tell you husband to relax, calm down, and get his heart out of his throat. Things will be fine. Different, but fine.

    Tell him to visit this site and talk to all of the people who are about to become your friends. The site may appear depressing at first sight, but dig deep inside --deep within it are doctors, nurses, writers, aviation workers, technicians, computer experts, crafters, moms, dads, etc., who love to live life!

    They will teach you much about your illness.

    They will be here for you when you are in need of information.

    They will be here for you when you are in need of a hug.


  9. Lexied

    Lexied New Member

    When I read your message my heart just sunk. I know how it is to feel guilty and "responsible" for the pain I am in and the stress of worrying about everyone else instead of myself only makes the pain worse. There have been so many times I have said "I'm sorry" for the hardship I put on my husband and family, but I know it's not my fault. I am so blessed to have such a loving and understanding husband and it makes me so sad to know that you are having to feel bad. I have found that a lot of the things I worry about aren't even happening. Your husband is probably feeling guilty himself because he is helpless to "cure" you. It's a horrible feeling when someone you love is in pain and you don't know how to stop them from hurting and the things your husbands saying is probably stemmed from fear & lack of control over your illness. Marriage comes with so many ups and downs, but we are to love each other in sickness & in health and I'm sure that you have had to take care of him just as much as he takes care of you. Please try not to feel guilty ... despite of all the things FM can take away from you it can also bring gifts and lessons about love and understanding. I think your husband is angry ... not at YOU, but at the illness he doesn't understand. Please know that you & your husband will be in my thoughts and prayers and I feel confident that your relationship will only GROW from this hand you have been dealt. God promises not to give us any more than we can handle ... he will carry you when you can't walk on your own! Please feel free to write me back ... I would really like to get to know you & help any way I can.
    [This Message was Edited on 07/31/2003]
    [This Message was Edited on 07/31/2003]
  10. melodie

    melodie New Member

    I have two kids and a husband who has been greatly challenged by this illness.
    The illness is a seperate thing...exasperated by stress and motherhood.
    The environment is key...can he be a man who rises to the occasion of this misfortion, and helps to lessen the stress, or is he a man who beats his horse to make it go up the hill?
    Remember, you and only you, has to endure the pain of this...he will either rise up to it, or let fear keep him down.
  11. scottabir

    scottabir New Member


    I am 23 years old and have been ill since I was 13. I have a wonderful husband who gives me as much support as he humanly can. He works 55+ hours per week, goes to school part time and still comes home and helps me out when needed. He makes time to give me massages (rare but he tries). He has never known me as "normal" so I am so amazed he STILL wants to be with me. He too gets frustrated with the FM. He becomes angry when I am referred to a new Doctor who tells me the same thing as the ones before "you are not sick, your mind is powerful and is creating this". He gets angry at the fact that he can't heal me. Recently I have stopped complaining so much about this DD because I saw that it only wore him out even more. Your husband just needs some time to adjust. Try not to force him to talk about it if he doesn't want too.

    However, the last two months I have been seeing my chiropractor and he has me on a wonderful program that uses supplements and nutrition to heal the body. I can honestly say I am feeling 65% better and I now believe this WILL end. This is not always a life sentence. You have your age on your side. My first suggestion to you is get rid of as much stress as you possibly can. My opinion is that stress is what brings on this illnesses and the lack of stress is what helps to heal this illness.

    Sorry to ramble on. I hope you and your husband fight for your health...don't settle!

  12. IntuneJune

    IntuneJune New Member

    Welcome to the board. I want to second the motion on Dr.Starlanyl's book, Fibromyalgia and Chronic Myofascial Pain, it is out in SECOND edition now, so look for that as it has more information. Hopefully your husband will read it with you and both of you will feel better.

    There also has been a lot of information posted here with more book suggestions, it can be overwhelming--I sometimes find it so, and I have had FMS diagnosed over 20 years ago. Tell hubby, I am on no pain medication (was in the past) and work parttime, and am a grandmother!!!!

    Glad you found this board. Fondly, June
  13. DavidTeer

    DavidTeer New Member

    15 months ago my wife was dx with fibro. We have been together 10 years. We have travled this state and then some. Sometimes going ou for dinner and ending up 200 miles from home. Those were the days. We were always on the move. Camping,fishing anything to get away.
    Fibro is best dx with doctor paitent relationship and a lot of understanding.
    This is very hard on a lot of spouses
    as it was and still hard for me. I made a vow to Gee to take care of her no matter what. Talking with her, buying her flowers or magizines what ever it is that might bring a smile. Gee is 53 and a lot older
    than you. so there is a good chance you will be able to manage this with your husbands help. I to get frudtrated at times but I find my own time to do it.
    He will figure out what to do. Iwork full time and take care of Gee also.
    Just remember that you have a husband that he working his buns off for you so that tells a lot. Sometimes you have to bite your tongue also. and he knows that it is hard on you. He knows and understands a lot. I wish you both the best of luck. Dave and Gee